Decorate

October ended with news that St. Louis Children’s Hospital (SLCH) was no longer comfortable performing Annaka’s liver transplant. This meant a transfer to a larger, more experienced hospital, and thus we were being sent to Pittsburgh. 

Using a metaphor that many of you will quickly understand, St. Louis is kind of like the Horace Grant to (CHP) Children’s Hospital of Pittsburg’s Michael Jordan.  SLCH is very good, but just as a basketball player might pass instead of taking a shot they aren’t sure they’ll make, Pittsburgh, with a half-century of experience, is one of the crunch-time players in the world of pediatric liver treatment. 

            Our first priority was to get Annaka listed at Pittsburgh, but to do that she had to be reevaluated by those doctors.  Thus, after about a week of trying to schedule the evaluation, on November 14^th JaLana and her mom headed East with the very patient patient in tow.       

JaLana and her mother stayed at a next-door Ronald McDonald House in the evening and went through one meeting after another during the day.  For three days they met doctors and other specialists; for three days Annaka was analyzed and studied.  They returned to Effingham with the understanding that, although it would take a while to get everything in place, she would indeed be listed for a liver transplant at Pittsburgh in the near future.

What this meant, though, was that Annaka now existed in this liver-status limbo.  St. Louis would still care for her up to the transplant and continue to offer her weekly albumin and lasik infusions to minimize the swelling in her belly.  It was also understood that about twelve-months post-transplant, once Pittsburgh believed she was well-enough and on the mend, Annaka’s care could be transferred back to St. Louis.  For much of November, however, she wasn’t listed anywhere, moving from one day to the next without a safety net.  For the first time in months, it didn’t matter how many organs became available; it didn’t matter whether we had our bags packed or not. 

This was unnerving.  To broaden Annaka’s chances, JaLana and her mother went back on the road the next week, this time to Cincinnati Children’s Hospital—which functions as the Scottie Pippen in this rather silly analogy—to go through the evaluation process there, too. Annaka again met her potential surgeons, but fortunately this time, because the Pittsburgh data was so fresh, most of the testing could be skipped.

The logic behind being listed at two different places was that these centers draw organs from different geographic regions.  Like fishermen with our nets slung off two sides of the boat, we wanted to give Annaka the best shot she had at getting the organ that would save her life.  The headache, though, behind being listed at two different regions is that every annoying thing about dealing with hospitals and insurance and scheduling was amplified.

For example, although our insurance had already approved her for transplant in St. Louis, they had to re-approve her in Pittsburgh and Cincinnati, too.  Medical flights also had to be prearranged; housing needed located.  One crucial task after another needed planned, and each task came with multiple human components, some of them warm and competent, some of them not as much.

Regardless, we were reminded once again of the aching whimsy of “free will.”  We did everything right, or, more accurately, JaLana did everything right while I did what I could to pick up the slack and stay out of her way.  From the hours of research to the hours of telephone calls, the hours spent not sleeping so Annaka could have the best nutrition possible, she made no misstep.  She knew what questions to ask and often knew the answer before the response.

Regardless, off to Pittsburgh they went.  Off to Cincinnati.   As November ended, we returned to St. Louis for an E.R. visit because Annaka had a cold and was having trouble breathing.  That was on a Monday.  We came home on a Friday. Twelve hours later, Annaka was back in the E.R., this time in Effingham because she was spitting up blood.  Back to St. Louis, this time in an ambulance.  Any last remnant of the fiction we once imagined, the fiction that says, “You are the author of your own life story,” fell out the window somewhere on I-70.

One thing that made me pause each time we returned, though, was the bright red, giant Christmas ornaments.

St. Louis Children’s Hospital, despite the pain often going on inside, is actually a reasonably cheerful place.  They decorate up for Christmas pretty good, with plenty of lights.  Outside on the small lawn in front of the building sit a collection of huge Christmas tree ornaments, as if they’d been dropped from the pocket of a holiday giant.

I remembered watching maintenance set them up last year—in the cold, the wind blowing—during our sonogram visits, back when we thought Annaka’s main problem would be the relatively minor omphalocele defect that could be patched up pretty quick.  I remember thinking, “This Christmas will be tough, but next Christmas will be better.  Next year we’ll be home.”

Annaka’s still quite sick, though, in a way we did not imagine.  A full year has passed, and still we ask these questions:

“How much control do you have over your life, really, when you’re not healthy?  How much can you influence your own life while taking care of someone whose liver barely works?”

Reflecting on those giant Christmas ornaments, though, it strikes me, finally, that these are the wrong questions to ask in the first place.  We can’t “control” our lives any more than we can control the weather.  Sometimes life is hard.  It’s cold.  The wind rattles us in directions we couldn’t imagine.

At the end of the day, we cannot control the weather. 

Fortunately, we can still decorate for Christmas.  We can do what we can to color our lives vibrant, and, more importantly, to help color the lives of those around us.

This idea brings us, then, finally, to Nancy Ervin.

As most of you know, our dear friend Nancy has volunteered to donate a portion of her liver to our daughter.  She and Annaka share the same blood type, so Nancy also went through a battery of tests in Pittsburgh to confirm that they are indeed a match.  Thus, on January 3^rd, barring any unforeseen circumstances, Annaka’s failed organ will be removed and in its place will go a fraction of Nancy’s liver.  Over time, God willing, they will both heal. 

This will be a fairly lengthy surgery with a potentially lengthy recovery time.  Despite the cold of this reality, however, Nancy is choosing to decorate the same way she has been doing for the last twelve months.  She and a host of other have taken it upon themselves to help decorate our lives with a generosity of time, resources, and spirit.

             Surrounded by such people, Annaka's second Christmas, along with each one afterwards, will undoubtedly be full of color.